Re: cystic hygroma-hydrops any help please!! -- Poor Prenatal Diagnosis-Advice And Support

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Subject:

Re: cystic hygroma-hydrops any help please!!

Author:
Stephanie (Pain)

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Date Posted: 16:10:37 09/18/08 Thu
In reply to: Nicole 's message, "Re: cystic hygroma-hydrops any help please!!" on 03:51:16 11/28/03 Fri

I am 19years old and 14 weeks pregnant. When i was 10weeks pregnant the doctor told me they saw a abnormal neck fold on the baby, but it sometimes goes away and since the baby is perfectly healthy other than that we should not be too alarmed. I went back 3 weeks later to find out that the baby has not progressed and the "neck folds" are now Cystic Hygromas, and there is a chance that the baby may have turner's syndrome. I was with a midwife group and they sent me to a Hospital where they specialize in deformalities in early pregnancy (savannah perinatology). So Today i just had by appointment and i went in very confident that everything would be okay. My ultrasound showed that the Cystic Hygromas have spread from around the neck now to around the tummy. The doctor says that there is a 99% of the time a baby like this just gets worse. So i had amniocentesis done and more blood drawn. Im just waiting for results. but even if they do come back with nothing is wrong, the doctor still said this baby would not survive. unless some miracle just happened and the symptoms got better. I met with a genetic counselor and she smoothed some things over with me. but i know im never going to be okay. this is my second pregnancy, my first one was around october last year and i miscarried at 5weeks. Its just so hard, im so young and i know i have pleanty of time, but when im haveing problems this early in life with pregnancy it just seems that its always going to be that way. I have been looking for some story of a similar baby who is fine, but i have yet to found one. I hope some of my information can help somebody. All i can say is just pray, that is all you can do.

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Author:
Sara (Emotional)
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Date Posted: 13:49:55 12/30/08 Tue

Hello everyone...I am 16 weeks along right now. I just got the news about 2 weeks ago. In a way this is a great site and has alot of real life info on it. Then again in the same way I don't feel much better reading the stories b/c there haven't been any good out comes. Like many of you I have decided to all god to choose when he would like to take our Caleb to be our angel, but you are ALL right it is an emotional rollercoaster waiting for it to happen. Not knowing is the 2nd hardest part. I am just hoping he is not in any pain. How do you get passed something like this??? It is every parents worse nightnear!! I started contracting on the 23rd and part of my water came out the day after Christmas. Within a week Caleb as gotten alot worse with his fluid in his belly. My heart is breaking and I just want some glimps of hope. No matter what I read or what the doctors say I still am holding out that miracle that everything is gonna be ok. My 6 year old daughter is taking this very hard too. It has been very hard trying to explain this to her when I don't understand myself. Well I wish you all the best and I will be praying for all the babies and families that have to go through this. If anyone has any advise please I could use all the advise and support I can get. Btw I have chosen to have a serive for Caleb if or when he does pass...what did or do you guys plan to do?? Well anyways god bless...stay strong!

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